How do you think you would feel if one day everything you did in regards to the sensation of touch felt different and your fingertips were hypersensitive? This is what I got to experience as I realized that for over five years I had modified sensation in the left side of my body. When I was paralyzed doctors tested my sensation and without further discussion thought I had full sensation because i could sense the cold, pointed tipped metal object that they touched against my skin.
Up until Luke warm water ran across my hands followed by excruciating pain I had not realized that the left side of my body had minimized sensation. When I started to regain sensation in my healing side everything was painful for about a week, whenever I managed to get a water temperature correct to not experience any pain either way I had to stop and mindfully observe how different it felt to have the bead of water run across my skin.
A wonderful part of regaining sensation is feeling the pain from my tattoo sittings. Honestly feeling that pain on the most sensitive spots to tattoo is now becoming intense enough to distract from my day to day body pain for that day and for a couple days after the crash from the adrenaline high. Hiding the stretch Mark’s from my paralysis and not seeing the constant visible reminders of that time period has also been a huge relief of my tattoos.
Regaining sensation has resulted in feeling it when I do not clear a doorway with my arm or shoulder from the slind spots though. It might be similar to that scene in my novel that I walked into a cement pillar at work, but with more profanity Haha. The most comical point of realizing I had less sensation than even I though was realizing that I hadn’t just been emotionally numb for years, I’ve been physically numb too.
What have you been doing to heal lately?
In the aspects of my continued recovery the thousands of hours I have spent on the physical rehabilitation are beginning to pay off. Every few weeks I am seeing a noticeable difference in my functionality and my energy levels. Despite my pain levels being higher, twice as high as they normally are, I am left hopeful in what the next couple years for me. The end of this tunnel is definitely in sight even if it is still up to twenty-four months away.
My pain levels only spiked because the athletic level of determination and perseverance is functioning at the warp speed it used to. This means that for each activity and retraining exercise I am putting in maximum effort for maximum result because I am sick of having a physical impairment. I will admit that I have been burning out in shorter time-frames because I refuse to give up, but all of this has left me feeling entirely optimistic about everything in life. I have even had to take some time recently to figure out what my life and career goals may be once I have reached the point where I can move onto bigger and better things.
For the first time in years o not require thirty ounces of coffee just to barely get through the morning. Yes I have had the energy to double my daily physio routine and honestly I would continue, but after the second round is where I start to lose mobility and dexterity. I know that if I continue at this rate over the next year or so that I will be able to go and pursue any of my hearts desires. It is medically pretty rare that anyone with a similar diagnoses gets as far as I have yet alone still has the drive or desire to continue to push forward after five years
What have you done recently that you are proud of?
This one was another reader suggested topic so here’s my attempt. With all the ups and downs of the roller coaster we call life it can be quite a task to learn to see things in a positive light and not kick ourselves when we are down. In both my transition and my continuous physical rehabilitation finding the positive aspects and internal happiness has been a skill I had to learn to not throw in the towel every other day.
One of the most helpful tricks I rewired my brain to do subconsciously and modify my own thoughts was to acknowledge the bad, but only give attention and focus to all the positive aspects of any scenario. Life truly is about finding the balance so instead of wallowing in the bad parts I figured out how to enjoy even the worst of my dysphoria days and the static days in recovery.
Some days I have limited to no functional mobility in my hand to this day, especially when I am stressed or sleep deprived. Instead of focusing on the anger I sometimes feel towards my paralysis I thank my body for not giving me any say and forcing me to take a rest day that I never take unless I cannot function. A day off here and there shouldn’t be an issue unless you’re a workaholic towards your personal goals like myself.
When my dysphoria get’s so bad that I wish I could rip my own skin off I find one part of my body that I at least like and find a clothing article that emphasizes it so that even my own attention is drawn to it all day. For me this is usually my bust despite all the pain it causes me. Sometimes distract-o-boob is all I need to get through an escalated dysphoric day.
I promise that if you can find one positive in every day and hold onto it that you will make it no matter the struggle. If you are struggling also do not forget to reach out to a friend or connect with your mental health professional and learn some healthy ways to cope.
Love and light,
In a few days I get the wonderful opportunity to celebrate the date of my paralysis and the increase over all these years of my chronic pain. Well that was an extremely dark intro and while yes I may be celebrating those things there is no one thing that has led to more personal growth, internal struggle, and pure happiness from within. On that note I’m going to talk about all the things I’m grateful for thanks to my recovery as I sit here writing this today.
The last 5 years I have been my own personal science experiment day in and day out. Whether it included applied past knowledge or I was just learning along the way once again I became the expert of my diagnoses learning what was best and worst for my recovery. With that knowledge I know I can tackle any task at hand no matter the time or effort it takes.
Having to be in a very committed relationship with my recovery despite all the struggles and even the times where I pushed my body past limits to where it got unhealthy. Every day despite wanting to fold and walk away I decided to fight it and prove everyone including myself wrong. It was the traumatic situations that I ended up in as a queer person with a physical disability that taught me to fight even while having flashbacks for days on end so intense I barely slept every night for a year afterwards. Knowing how far I had come and with the support of a few phenomenal friends I made it through.
3. Indomitable Spirit
Despite the hundreds of bad days I’ve had in this period I still got up every day and trudged on with a smile on my face. It was only this year that smile stopped being a mask of my physical and emotional pain, but hey we all have to fake it until we make it sometimes. This year I also started having flashbacks to the moment that my paralysis set in and I had to find the hope to recover instead of getting trapped in the fear of what was to come and the waterfall of tears pouring down my face.
4. A Modified Prospective
Trading one illness for another and adding a loss of some of my visual field in both eyes. Literally I see everything a little bit differently now. This is amazing I used to hate life so much and even with less joy than struggle in recovery the light has been so much more valuable post paralysis. It was the beginning of a streak of traumatic events that taught me to find the positive aspect in every situation. Now I am always looking for the lesson in the bad and appreciating the good.
5. My Authentic Self
My paralysis taught me that no matter how hard anything is I can make it out on my own so after my body was what I considered healed enough to begin my medical transition I did. With the loss of muscle mass the muscle tension in the left side of my body was conveniently reduced and it became easier to heal once again. As most trans people would tell you starting that process was the beginning to an end and removing that weight of not being yourself makes every day a lot easier. Yes I had to disown most of my family once I took those steps, but the self-love that took their place in my life more than made up for it.
I guess the really cliche thing to say would be I love my imperfect life.
Most people do not come equipped with the singular focus or dive to Male their recovery from anything their top priority. One of the best things for my physical recovery was the singular focus that comes with being atypical. Since the day I decided I would beat this it has been my top priority and a bit of an obsession. I was one of the lucky few who knew at the time of my paralysis because I was a martial artist and a pole fitness practitioner. Even almost five years later my recovery is my top priority and nothing will get in my way until I am 100% recovered no matter how long it takes me.
Making ones health a top priority is isolating, can be lonely, and at times will make you feel like you are going to lose your mind. Even within friendships the time spent together had to be mutually beneficial otherwise it was another thing that added to the long list of things I felt obligated it do and eventually died off. Anyone who consistently took time away from my week got cut off. For example I had an “acquaintance” that thought they we fiving me something to do when they would pick me up just so they had a buddy while running their errands all day once a week. I’m sorry but if I want to accomplish nothing and just be there to fill a space I would rather it was my space on the couch doing something to heal my body like occupational therapy exercises.
I’ve never met anyone else that sits down with a pot of coffee every day and assesses what tweaks can be made in every aspect of their physical rehabilitation to improve the balance to get where they need sooner. Martial arts may have never been my thing despite the nine years I trained, but it did teach me that every day you can make something better if you are willing to put in the time and effort required.
My paralysis set me back in every aspect of my life but no matter the loss of potential earnings or being several years behind where I want to be. Friendships lost, opportunities not taken, I still see my paralysis as one of the best things that has ever happened to me because it taught me that I can make it on my own no matter the odds. When I heal and am ready to pursue all the things I want accomplished it’ll be a hell of a lot easier because I know how to not give up.
I have learned a lot even since I published my book, what do you guys want to know more about?
I would like to start off by saying I’m sorry that I have been AWOL for a while and I miss interacting with you guys. Up until the holidays i have been trying to mentally prepare to see my family this holiday season and it did not work. I only know a couple of people who normally do not struggle with the holiday’s and these people were on the same ship sailing to the same unknown destination.
As rough as these last weeks may have been I can say that some awesome things happened too. For example I got the chill with a bunch of friends instead of seeing my disowned family on the twenty-fifth. Thanks to struggling with my upcoming trauma dates I have been tackling my mind with obsessive amounts if exercise and have made some progress with my micro movements. Seeing the good in the bad has been one of those beautiful skills I had to learn since hemiplegia
Spending the holidays with a bunch of queer friends where nobody’s gender identity was an issue or hot topic was nice. It may have even been the first time I ever got those warm fuzzy holiday feelings that I have heard people rave about my entire life: Pizza, board games, friends, laughter. The kind of event that makes me not want to spend another holiday with someone that shares a gene pool or bloodline with me ever again.
I need to slow down again I have been pushing myself too far for too long and it is probably why my pain is high resulting in varying levels of sickness. I might even make it a goal for next year: be less sick haha. I hope you’re all doing well and are having love filled holidays.
I sit here a little overwhelmed at everything that is going on right now, but realistically I am coping pretty well. Both physical and emotional pain have been high for a couple weeks, and I’m doing what I can to deal and push through it. With my pain levels as high as they have been my progress has slowed, and I’m trying to accept this as just a step in the process.
Let’s start with the emotional pain: this week my brain acknowledged that a handful of trauma anniversaries are coming up all within the next two months and I’ve been using every coping mechanism I have. I’m lucky enough to know myself and exactly what I need in these times because, December and January have been tough ones for me for years now. My most used tools this week were: square breathing, meditation, physical activity, and getting musically creative. If you are struggling this season do not forget to reach out to someone you trust and talk about it.
Between a spike in my chronic migraines and recovery pains I have gone back to having more rest days than productive ones and being the perfectionist I am is quite frustrating. So much of this time is spent pent up on the couch staying as still as possible so I don’t make the nausea worse. Probably why I used to play three instruments that took little to no torso movement before paralysis haha. As the body heals and muscles grow so does the pain. It feels like every other day the pain is a new game. I have to wake up and take each day as it comes, no plan, only a general direction and the internal drive to continue to heal.
I am hoping that next week is at least physically easier so I can get some of my personal goals back on track. Whatever happens happens and will continued to be honoured as just part of the journey. How are all of you doing this week?
Everyone will tell you that recovery eventually gets easier. I am well past my half way mark and I have to say I cannot agree. There’s nothing worse than being so close to being able to do all the things you desire and yet all of them are out of reach still. So I guess all of recovery is difficult for different reasons. At the beginning it was finding the drive to keep going every day, in the middle it was the struggle of lost time because every day looked almost exactly the same and closer to the end it’s trying to not best yourself up for being so close, but so far away.
At the beginning one just goes on because they are told to, despite everyone and I mean everyone saying you’ll never get better especially after every treatment to try to correct it fails. You eventually begin to lose hope and direction and you resort to living each day just to get through the day in front of you. One day none of the tips or tricks you were given to help you work at all and when you find ways to curb it is where the next stage begins. The beginning was the worst for me because it also paired with the severe post op depression that comes with neurosurgery. I had to convince my brain every day that there was something to fight for even though most of the time I did not believe it myself.
The middle of my recovery was a strange stage where I became obsessed with finding the best ways to better my physical health. Every free waking moment spent running every possibility through ones mind of the exercises, stretches and activities one can try to get better. This was a stage where most things only worked in bouts, there was a fair bit of crossed pathways so it was a stage summed up by “One step forward and two steps back”. This felt like a plateau without further analysis, but really my body was trying to sort out its own problems, which on the outside appeared with what looked like severe muscle confusion. Then comes the final stage and final stage take: 2
In the second to last stage you are conquering recovery, have figured out how to thrive through both your good and bad days and are just itching to get back to a normal life without putting your health on hold again. This is where I am at, I can see the stars, yet I still cannot smell the roses. Every time you think you’re almost at the finish line it turns out it was a mirage and you’re going to have to fight like hell to not give up every day. I know that every other day I get a little closer, but still just wish I could pick up and start over where nobody knows my name. I’ve mastered my habits so on these days I try to just rest and maybe take a nap if I’m super trained.
I hope to get to the final, final stage within the next couple of years or so, so that I’ll be the fun life living person I used to be once again. Even if the rest of my life involves a couple of hours of physical therapy a day that would be a lot more manageable than eight to ten-hour days.
What have the stages of your recovery been, feel free to share them with me.
People often ask why I have so many creative outlets, and instead of just saying for my health as I normally do I thought I would elaborate on it a little further. Whether it’s sketching, writing, painting, or practicing an instrument all of my creative outlets come with more than one benefit. They both help to better my mental and physical health and why would I argue with things that all around help me feel a bit better?
The human brain responds differently to each different type of therapy (physical, occupational, music, art, etc.) So other than my recent focus on physical therapy and music therapy I do my best to keep it well rounded so that all areas of my brain and my injury are getting the attention that they need. As of late my body has clearly been responding better to music therapy so that’s how I exhaust myself on days when I can focus on my physical health.
Even before my paralysis, art has always been my outlet. From visual and fine art to performance arts they have consistently been my go to. Even bored in classes I used to just sit and doodle through lectures because my teachers and instructors never said anything that was not already in the textbook haha. The sooner one finds healthy ways to cope with what life throws at us, the sooner we can thrive. Then there were my teens that were very dark so I always just drew what I was feeling. I actually went through all my old sketches from that time period last week and realized i was in a lot more pain than i acknowledged at the time. From faking happy to being genuinely happy in an 7 year timeframe, it’s an astronomical difference.
In the comments share with me what your devices are.